Friday, April 5, 2013

"C" is for Catheterization

I can't believe I've already fallen behind in the A to Z Challenge. I guess that is why it is called a challenge though.  So, I will be playing a bit of catch up over the next couple of days.

"C" is for Catheterization - specifically Heart Catheterization.  Which is actually what my daughter had on Wednesday, the day this was supposed to be posted.  For those unfamiliar, heart transplants are monitored for rejection in a number of different ways, some more invasive than others.  Once a year, a heart transplant recipient receives what is called an annual exam, which includes a biopsy testing for cellular rejection, testing of the arteries for any hardening, and testing pressures on both sides of the heart.

With older children and adults, they can use a local anesthetic, but with smaller children who can not really follow instructions or stay still, they use full anesthesia.  So, it is a surgery, but the incision is very small - more like a scratch than an incision.  I thought I might share our day of the "cath". 

This Wednesday, we arrived at the hospital around 7 a.m., went to the Ford Surgery Center to get checked in, all the vitals taken, etc.  We were then taken to the pre-op holding area, where Bean was given a pre-op medication to help her relax and forget any trauma that happens in the pre-op time.  We then walk down the hall from Lucile Packard to the Stanford Hospital side where the cath labs are located.  (In the new hospital that is being built I think LPCH will have their own surgery areas and cath labs, but right now, everything goes down to the Stanford side).  I had to dress in some ridiculous looking sterile garb to walk down the hall and into the surgery room with her and then we laid her on the operating table and as they tried to put the anesthesia mask on her she freaked out and started bucking like a wild animal, screaming, and crying.  It took three of us to hold her while the anesthesiologist held the mask over her mouth and nose and we waited until it took effect.  This is typical and she never talks about it, so I imagine she forgets it afterwards.  She talked about me being dressed in the "nursing" clothes after and walking down the hallway, but said nothing of the anesthesia mask.  So, that is a a relief to know that she doesn't really remember it at all.

We then go back down the hall to the LPCH waiting room and wait.  The typical cath is anywhere from 30 minutes to an hour, but the annuals sometimes take a bit longer.  We grabbed some breakfast then sat and watched TV, did some computer work, and chatted with my in-laws who were nice enough to drive up from Bakersfield for the procedure.  In about an hour and a half (they don't start immediately because they have to get an IV placed, take some blood for labs, etc. before starting, so this was actually pretty good time) we were told they were done and she was coming back to the PACU (post-op recovery).  The doctor came in and told us that everything looked good and she did well and we waited another 15-20 minutes to be called back to the PACU to see her.

Each time in the PACU is different.  Sometimes she is still asleep.  Often she is crying, but pretty out of it.  This time, she was in the middle of the post-op Echocardiogram and she was crying pretty hard and fighting the echo tech with all she had.  She was rolling away, trying to grab her arm and move it, kicking her legs.  And she was still pretty out of it.  The echo doesn't bother her much anymore when she isn't post-op, but the nurse a few times ago told me that some of the kids have a reaction to the anesthesia that makes them really angry and emotional.  I think she is one of those kids.  Because even when the echo tech finished and left and I was able to hold her and rock her, she was not very comforted.  After about a half hour of crying, trying to get her to take a popsicle or water or juice, trying to convince her to keep her leg straight and still so the entry sight would not bleed, and just general misery, we were told we were moving up to the Short Stay.  This usually happens only after the annuals because they have to put them under deeper and longer and it takes them longer to be completely recovered from the anesthesia and they want to make sure there is no bleeding at the sights.  For other, shorter caths, we're usually able to stay in the PACU and leave after an hour and a half or so recovery.  But, for this one, it is a four hour recovery.  So, they send us to the Short Stay where there are shared rooms and not a nurse assigned to every bed.  She was angry and miserable for about another hour or hour and a half and then she got hungry, so we ordered food for her and she ate and started to feel better.  It was a lot of sitting, trying to calm her down, make her comfortable and dealing with our own hunger and exhaustion.  We got lunch from a local Jack in the Box, ate in the lobby and by that time, they were releasing her.  It was 2:30 p.m.  So, we had been there for 7 1/2 hours and we were now going to have to drive back home, which is a 3 1/2 hour drive!

It was an exhausting and long day, but we received nothing but good news and the next day we were given the news that she had a zero in rejection!  So, all in all, it is worth it to know that she is doing well and her heart is doing well.  But, the catheterizations have become a new level of stress because of the heart valve damage that happened last year.  You can read about that and the aftermath of it here.  But, all went well, and I'm feeling better about things now.  It is good to know that there is no rejection. Even when she seems perfectly healthy, it is sometimes a worry.  So, the catheterizations and biopsies are really the only way to get a guarantee that no rejection is happening in there.


  1. Sue,

    Thank you for sharing Bean's story. I am sure it will help those who are going through a similar experience, and it helps others to understand and increase in compassion for families who don't have it as easy as some.

    One of my sons was born with very little lung tissue. At the time, I had vague thoughts of lung transplants, but his heart failed due to unknown reasons while on life support and he died. I don't think he was meant to live. I often write about my baby on my blog, and many people say it helps them with their own grief.

    So keep writing and sharing! And enjoying your beautiful daughter who really is a miracle. I am sorry she has to undergo the pain and trauma of regular procedures. I hope she soon recovers from the latest one.

    Thank you for visiting my blog!

  2. Good news!
    Does the hospital let Bean take a stuffed animal in the OR with her? Just asking because my daughter had surgeries when she was young and she was allowed to take a stuffed animal in and they put the mask over its face first before doing hers. It really seemed to help.

  3. Stopping by from the AtoZ challenge. You're daughter is such a cutie. I wish her a future of health and happiness.

  4. Bean's story is truly a miracle.

    Happy J Day!

    Just visiting from a fellow A to Z Challenger.

  5. actually, i left a comment on a post you'd written in august of last year, and for some reason, when i first visited your page, it was the first post i saw, and so i'd thought of it as your most recent. but then i found this one. i'd been worried, since i'd thought that the august post was the last, that your daughter hadn't done well since that post, but i see that, for the most part, she's doing well enough. i'm glad. i such light in her in those photos. i hope all the trouble she's had doesn't lessen that over the years.

  6. Sue,
    Thank you for sharing Bean's story. I cannot even begin to fathom the multitude of emotions that must unravel daily for both you and Bean. Thank you for sharing your honesty and courage. She is such a light!

  7. Sue,
    I can't even begin to fathom the multitude of emotions you and Bean must work through on a daily basis. What an incredible day among many. Thank you for sharing Bean's story. Thank you for sharing your wisdom and courage. Bean is such a light!


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